257 Discussion Part 2: Patient Reported Outcome Measures The second part of this thesis focuses on the use of Patient Reported Outcome Measures (PROMs) in clinical practice. PROM implementation is a challenging process and successful implementation requires involvement of all stakeholders, definitely including patients and parents. Chapter 4 provided insight into the experiences of clinicians on the implementation of PROMs in pediatric clinical practice using the KLIK PROM portal. Clinicians were generally satisfied with the use of the KLIK PROM portal. It gives them a valuable tool to systematically monitor and discuss patients’ functioning. However, several barriers were mentioned such as irrelevant and long PROMs, low response rate, and no integration with the electronic health record (EHR). Chapter 5 focused on the experiences of patients and parents. Both patients and parents were satisfied with the usability and effect of the KLIK PROM portal on the conversation with the clinician. However, some points of improvement were identified; again irrelevant and long PROMs, PROMs were not discussed by the clinician, and a suboptimal lay-out of the portal. Applying implementation frameworks, such as the Consolidated Framework for Implementation Research (CFIR), can yield valuable insights into facilitating determinants and barriers in the implementation process. Subsequently, targeted implementation strategies can be identified. Chapter 6 described the most prominent determinants for successful PROM implementation of the KLIK PROM portal; intervention characteristics, characteristics of individuals, and process of implementation. In addition, barriers were identified; inner setting and intervention characteristics. The strategy ‘identify and prepare champions’ was acknowledged as the most effective strategy in addressing the combination of identified barriers. To overcome the barrier of burdensomeness of completing PROMs (i.e., long completion time and irrelevant questions), Patient-Reported Outcomes Measurement Information System (PROMIS®) Computerized Adaptive Testing (CAT) can be used. The feasibility, psychometric properties and outcomes of eight PROMIS pediatric measures for boys with hemophilia were assessed in Chapter 7. Results showed that almost all PROMIS pediatric measures were feasible and reliable for use in clinical hemophilia care. The PROMIS pediatric measures are therefore a valid alternative to the well-known legacy instruments, with lower floor- and ceiling effects. Although the number of completed items was higher for the PROMIS pediatric measures on domain level, the number of completed items in the selected set of PROMIS 9
RkJQdWJsaXNoZXIy MTk4NDMw